Kickas.org
Posted By: RBarnes The fatigue ... the soul-crushing fatigue - 04/16/15 03:25 PM
AS friggin' sucks. Fact is, though, that the pain isn't always the worst part. Don't get me wrong - some days it hurts bad enough to bring tears to my eyes and I've always had a pretty high tolerance to pain. But the incessant, unfathomable fatigue is killing me. It's like a thirst that can't be quenched, no matter how much water you drink.

When you talk to friends, co-workers, SOs, etc. about fatigue, it's impossible to convey the depth and breadth of AS fatigue. It's not "tired". It's unlike anything I've ever experienced in my life - you sleep because you're fatigued, you sleep poorly because of the AS pain, you wake up more fatigued than when you went to sleep. Repeat and repeat and repeat. Worse and worse and worse. Day after day after day.

I had 3 FMLA days last week because of extreme pain and fatigue. Somehow, I've managed to make it through the workweek - 11 hours Monday, 9 hours Tuesday, 8 hours Wednesday. Each evening, I've fallen asleep between 7 and 9 pm and "slept" until 6:30 in the morning. Each morning, I wake up more fatigued than the night before - until, suddenly, I've hit the wall. HARD. The fatigue has basically taken over. I want to go home, but I'm not even sure I could make the 10-minute drive to my home right now. I stare at my computer screen for minutes at a time - not awake, but not asleep either - just ... nowhere. My phone rings and it takes all the willpower I can muster to just answer.

Writing this post itself has been exhausting, but I want to know if others are experiencing fatigue at this level due to AS or if there's something else wrong here. AS friggin' sucks.
Posted By: EricaK Re: The fatigue ... the soul-crushing fatigue - 04/16/15 05:38 PM
Totally agree with you that the fatigue and sickness is worse than the pain. I'm sorry yore feeling it so severely. hugss
Hello there,

AS does suck... feels good typing it though.

Fatigue is something I have battled rarely...but when I have I do agree with you that is kills me as well. It is difficult for my wife to understand the fatigue factor of AS.

Fortunately I do not experience it much anymore.

Tim
Posted By: Sue22 Re: The fatigue ... the soul-crushing fatigue - 04/17/15 01:22 AM
For me, when I flare, the fatigue is like the fatigue I get when I get the flu...all I want to do is sleep...for like 12 hours straight.

but if the pain is bad enough, then we can't sleep, and so we stay fatigued.

At least with the flu, my body wants to sleep and sleep it does.

With spondy, my body wants to sleep, but it can't.

Yes, this fatigue of which you speak is fairly "normal" for spondy. In my experience at least.

Only on methylpred and now Humira did the fatigue lift.

I was so fatigued for so long I didn't even realize the extent of it, til I finally found something that lifted it.

and if it had been caused by something else, the methylpred and humira wouldn't have had an effect on it.
Fatigue is what got me to a rheumy in the first place. Like so many others i went misdiagnosed for many years. First i was put on humeria, that helped with fatigue but it was still a big problem. Next was a change in my diet, no starch diet helped some more. I started taking LDN about 6 months ago and that helped too. I still have fatigue but its very much improved. The better I manage AS the less I suffer from fatigue. Mike
Posted By: gbash Re: The fatigue ... the soul-crushing fatigue - 04/17/15 04:43 PM
The need to sleep and the inability due to pain was my regular life before Enbrel, and then after I had to quit it and before I started NSD. I was always in a bad mood, so my poor wife suffered also. Before Enbrel, my only comfort was food, thus my weight ballooned up by 50 pounds (which I've lost since then). Yes, AS sucks big time.

--Greg
Posted By: Lon Re: The fatigue ... the soul-crushing fatigue - 04/17/15 05:00 PM
R Barnes-
How are you feeling today.
Strangely enough, the only things that gives me energy is sugar of course, and then the crash; and exercise if I can stand it.

C-Pap helped me sleep. I actually enjoy not having to fight to get a breath.
Hello, RBarnes:

I remember that fatigue, when I had active AS. So much important time lost to AS! Will never again let this disease back controlling my life to that extent.

Although there is a nutritional component to the fatigue, solving it really requires getting out of nutrient-wasting inflammation first; we need a lot more of everything than average people.

Fix the AS and the energy will come back. Regret both of these things take time and considerable patience.

HEALTH,
John
Thanks, all, for the kind replies. It's a comfort to hear from others who are experiencing some of the same things I'm going through. I've made a personal decision (for better or worse I may never now) to avoid the anti-TNF medications. As such, for me, it's NSAIDs and Norco. Oh, and fresh ginger root. Seriously. A few slices a day does more for my inflammation than my Meloxicam. Anyway ...

I ended up leaving work at 12:30 yesterday. My body really left me no choice. Somehow, I managed to make it home awake and then proceeded to sleep for 6 hours on the sofa (seems to be the place where the pain is least).

This sounds odd, I know, but when I woke up, a phrase kept running through my mind: Give up or get up. I don't know where it cam from but the message was clear and I'm not ready to give up. Not even close. This disease is a bully, but I've stood up to plenty of bullies in my life. Haven't lost yet and I don't intend to lose now.

I know there will be many days AS will win, but there will also be days I will win. As I told my wonderful, understanding wife last night: I may go down, but I'm going to go down swinging.

Today, I'm back at work. My SI joints, knees, ankles, hips, back, neck, and ribs hurt like h-e-double hockey sticks. Truthfully, I feel like maybe I lost a barfight last night, but I'm here. I'm going to go home tonight, do some yard work and enjoy the beautiful spring day God has blessed us with.

Thanks again to each and every one of you who took the time to send a few words of comfort my way. Means a lot.

Have a great weekend, everyone.
Posted By: dmx07 Re: The fatigue ... the soul-crushing fatigue - 04/17/15 07:28 PM
Hello RBarnes,

Hope you are feeling better.

It's the biggest mistake of your life "avoiding" anti-TNF. May I ask why?

Inflamation and fatigue go hand in hand, a tnf inhibitor will definately help with tiredness and significantly reduce pain in your peripheral joints too, not just spine.

AS destroys cartilage in joints which cannot easily regenerate so you I hope you reconsider your decision.
Thanks dmx. I sincerely appreciate your concern and advice. I have several reasons why I've declined Remicade treatments at this time, but they're very personal reasons which I would not be comfortable discussing here.

My most recent MRI was clean (no fusion) - even in the SI joints. Of course, this was almost 1 year ago and I know I'm sitting on a ticking time bomb. I'm just hoping it has a long timer. wink

Perhaps down the road my situation will change and I'll take the anti-TNF route, but for now, I'm just going to have to keep fighting the good fight!
Originally Posted By Sue22
For me, when I flare, the fatigue is like the fatigue I get when I get the flu...all I want to do is sleep...for like 12 hours straight.


+1

That is a good description.
Hello there RBarnes,

If not interested in looking at No Starch or Low Starch, I would still encourage you to eat healthy if you are not.

Lots of fruits, veggies, lean meats, whole grains (if want starch), foods with probiotics (organic yogurt, sauerkraut etc...).

Toss processed foods, junk foods, soda etc...

We have to help ourselves with battling this disease.

Hope you can find some answers to the fatigue and pain.

Best to you.

Tim
Posted By: dmx07 Re: The fatigue ... the soul-crushing fatigue - 04/18/15 07:49 PM
Originally Posted By RBarnes


My most recent MRI was clean (no fusion) - even in the SI joints.


That's very good when were you first diagnosed?

Did you know that starting anti-TNF early on can quickly put you in remission and in a small percent of people when the drugs are stopped their AS doesn't come back?

Essentially that is a cure and it's worth the risk although in most people the disease is lifelong.

How is your fatigue and pain today?

I myself don't have fusion in the SI joints too plenty of pain in the upper back.

Recently it started going up my neck so this area feels very stiff in the morning.

frown

I am 31. I don't know how I am gonna live with this some days I am really struggling with my own body.
Thanks, Dotyisle. I've been reading quite a bit about the low-starch and no-starch diets. It's certainly something that I'm interesting in trying, but I have no doubt it's a challenge especially given my love for all things food-related.

dmx, I started having pain in my SI joints (usually while driving) in 2009. I just passed it off as me getting a bit older. Then it started bothering me when I slept. The clincher was when, while on vacation at Disney World in mid-2013, my entire right leg went completely numb. That, coupled with the increasing pain, is what sent me to the dr. My primary care physician took some blood tests, x-rays, etc. My inflammation markers were, of course, quite high. He sent me to a rheumy who, after a thorough physical exam and more blood tests (one for BLA-H27), x-rays and an MRI, diagnosed me with AS. This was in September 2013.

I've read a lot of information about TNF inhibitors and, if I am being 100% honest with myself, I know that's the next logical step in the treatment of this stupid disease. I also know that the longer I wait, the more risk I have of permanent damage. Still, for now my choice is to "stay the course."

My pain today isn't too bad - though our baseline for "bad" is slightly different than that of a healthy person. frown The fatigue's pretty awful already, so I know I'm in for a looooong day/week.

I'm very sorry to hear about the pain in your upper back and neck, especially since you're only 31. I guess in a lot of ways I'm lucky as I didn't become symptomatic until I was near 40. Hard to feel lucky sometimes, though.

Wishing all of you as pain-free a week as is possible!
Posted By: Lon Re: The fatigue ... the soul-crushing fatigue - 04/20/15 05:37 PM
RBarnes,
Hi.
My experience is that as The N/L starch diets begin to clean out my system, I get very, very, tired. The loss of sugar also affects my emotional need for energy to deal with the exhaustion.
My family is strong and short but we all over eat to compensate for lack of energy. A vicious cycle.

You can improve your life and find value in things that many take for granted. I am glad that you are here, and that you have found the love that even our brothers have for each other.
Posted By: dmx07 Re: The fatigue ... the soul-crushing fatigue - 04/20/15 10:47 PM
Most of my pain is right in the middle of the spine, yes.

I hope you decide to try a bilogic and save yourself from permanent damage which you will have to live with for the rest of your life.

Are your eyes affected?

I have dry eyes and use artifical tears daily.
Probably not very helpful but at least you guys can complain about fatigue. My fiancé has narcolepsy;not the fall asleep where you stand level but the chronic excessive fatigue and cataplexy kind. Not even 60mg of Adderall touches hers.

So yeah, I can't even complain at home about mine lol. Fatigue really is brutal. Mine usually leaves me feeling really depressed too.
Posted By: Sue22 Re: The fatigue ... the soul-crushing fatigue - 04/21/15 01:40 AM
Originally Posted By RBarnes

I've read a lot of information about TNF inhibitors and, if I am being 100% honest with myself, I know that's the next logical step in the treatment of this stupid disease. I also know that the longer I wait, the more risk I have of permanent damage. Still, for now my choice is to "stay the course."


of course the choice to start a TNF inhibitor is a personal one, but I will add my 2 cents.

i wish I had been allowed to try them 15 years before I did. I had 12 years of out of control inflammatory flares that were really bad before I could find a doctor to dx and treat me.

Back when it all first started, my neck was "bad" but not bad the way it is now. All those years of uncontrolled inflammation and now my neck has progressed such that I have bone spurs bad enough that they press on the nerves causing the following problems:

1. I stopped being able to sleep laying down dec 2013. Before that I could, on a good bed, with a thin feather pillow. but not now. Now I sleep in my recliner. thankfully I have a good recliner.

2. i get cortisone injections into the facet joints of my neck. Currently I had those done for the last 3 christmases in a row. They help.

3. I can only sit in / on low hard flat chairs. I can only drive my old 1995 saturn with 250,000 miles. don't know what I'll do when that car finally dies; all new car seats seem to be evil to my neck.

and this is how my SI has progressed:

started in oct 2000. initially it only hurt / was inflamed / caused muscle spasms during flares and then for the weeks / months following a flare.

around 2010, my SI joint damage was chronic enough that I can no longer go swimming, it often is achy, I can't climb stairs or hills without flaring it.

If I had been able to start a biologic back in the late 1990s when the symptoms first started, maybe my neck and SI wouldn't have the damage they have, wouldn't be so chronic now.

My rheumy's predictions were correct. He said that humira would be most helpful for the body parts that didn't have damage, like my feet and wrists, but for the spine (neck and SI), since I have bone spurs (caused by the inflammation) and arthritic damage in my SI (caused by the inflammation), that damage isn't going to go away.

Prior to the humira, the combination of damage and inflammation impinged the nerves more. At least the humira reduces the inflammation so the nerves aren't so impinged. but boy, imagine if the damage (bone spurs, etc) weren't there!

but yes, your personal choice. I just wish for myself, my spondyloarthropathy was recognized back in the 1990s. I started with the severe GI inflammation and symptoms in 1993 and severe joint symptoms in 1998. But it took til 2010 to get diagnosed and treated. and finally 2013 to get the humira (as we tried other things first: nsaids for a few months, then methylpred for flares).
Wow, I really appreciate the time you took to write your post. I'm supposed to talk to my rheumatologist on Wednesday regarding what to do next. I finally found a specialist that I trust with my life and I'm finally ready to accept that I have a serious illness that demands big time medicine.

Anyway, you helped to ease my anxiety a little bit tonight so, danke!
Posted By: Nonnie Re: The fatigue ... the soul-crushing fatigue - 04/21/15 05:17 AM
I know that fatigue, I imagine we all do here. In spite of the fatigue, I often find myself trying my best to stay awake at night. I'd rather stay awake than go through the mornings. I'm on Humira right now so that helps, although I had to stop taking it while sick.
I've been on biologics about 10 years now. Given the choice I'd do the same thing again. I was on Remicade for over 8 years until it didn't seem to work any more. Then I switched to my current Humira.
I'm not trying to push or assume, but just to make sure you and anyone else is aware, you can get on what they call a co-pay assistance for Humira. They put me on one and my copay is $5 for each month of Humira. I have health insurance, and we're comfortable as far as income. So I'm not sure how they determine whether you get it, I don't think it's because of income. Another thing, it's also very easy to get. They are extremely nice people.
I like your suggestion about getting Humira for less of a cost. I have Medi-Medi, live in the US, and have asked my reg DR. for at least 2 years to send me to a Rheumy to try this out. I am over 65 so now I can go see a rheumy without my Dr. Permission first. I went into remission (I thought) with antibiotics for about 13 years but I still had pain, I still have pain and I'm sitting here on a lot of morphine and it's been 10 weeks since my last surgery on my shoulder. You piano and lil boy are darling. Kelly Pritchard
All of you have been so encouraging and helpful. I've very happy to have joined this site.

I have an appointment with my rheumy at the end of May. My wife and I will sit down again before that time and discuss the pros and cons of the anti-TNF treatments and what's going to be best for me and my family moving forward. I'll keep you all posted as to my decision.

dmx, not too much trouble with iritis or anything like that yet. Keeping my fingers crossed that I can avoid that.
The fatigue always gets pretty bad for me the 2nd week of my 2week shot/medication. I am due a shot on Saturday. I got up this morning at 6am, and it's only just now 11am or so that it's let up/ eased up for the day. Until just now my fatigue this morning was so bad I could barely function. I think the fatigue is worse than the pain, it often makes me depressed. It often drives me to bed around 8pm. I think some of it is from lack of sleep due to waking up in pain, or not sleeping due to pain.

In the mornings what gets me through it all is to listen to music and trying to move, walk, stand up. Although it's easy for me to get stuck and just sit or lay down which only makes it worse until about 11-noon. Getting into any altered state of mind helps. ie. music, reading, meditation, exercise, food or caffeine buzz, etc.,

I don't know. It's a mixed bag. I am glad I am not the only one though, cause 99% of the people around me don't know or get it. They just feel sorry for me if I try to tell them how I really feel. I usually just try to fake it until I make it. You know, grinning while sobbing on the inside.
Jason, I agree that it's nice to be able to talk to people who understand what you mean by "fatigue". Healthy people interpret that as just being tired, but it goes so much deeper than that and it's difficult - maybe impossible - to explain it to someone who hasn't experienced it. It can be all-consuming.

I also try to keep myself going with music, walking, caffeine, etc. Sometimes it works, other times there's just no controlling it. I've nodded off at my desk so many times in the past six months, it's a miracle I haven't been fired. ;-)

I see you also have sleep apnea. Do you use a bi-pap?
Nonnie,

Thanks for the information about Humira. I have often wondered how to pay for it once I decide to get on it. It is really expensive and my insurance will pay everything but $400 monthly. That is still a big chunk of change for me. Right now I am controlling it with NSD with only minor flares but I have fusion in the SI joints and mid back which keeps me from reaching the floor.
Originally Posted By RBarnes


I see you also have sleep apnea. Do you use a bi-pap?


Yeah; Cpap. I've had one oh, for about 10 yrs or so. I go through phases using it off an on, depending on allergies etc., Its a love hate relationship.

I am doing better with fatigue today as when I get real bad I start fasting. I find it helps overall symptoms and energy levels. Although I am still dealing with osteo arthritis and bone spurring and fibrosis. I have a that in my hips and neck. I am an unapologetic lazy dude when it comes to diet.

I've got some tramadol and Vicodin, so it's not too bad.

Oh well, I always tell myself, I still have all my limbs, eyesight and am not in a chair, so I can keep going just fine. I've had continuous pain since I was 17/18 so it takes a lot to phase me. It helps I am an introvert to begin with so the fatigue has never made me feel too isolated. The only thing that bugs me about it of late is watching the effect it can have on family. I am fine with myself, but when you don't cant participate in stuff it can be hard.

Right now I am "experimenting with turmeric" as a anti-inflammatory. So far I've not seen any result.
Posted By: dmx07 Re: The fatigue ... the soul-crushing fatigue - 04/23/15 08:22 PM
Turmeric won't help because it's poorly absorbed even when mixed with butter, some take it with black pepper.

Do you get full relief from NSAID?
Originally Posted By dmx07
Turmeric won't help because it's poorly absorbed even when mixed with butter, some take it with black pepper.
Do you get full relief from NSAID?


Thanks for the comment on Tumeric. Good to know. NSAIDS? I took high doeses of them for 20+ years. And do help, but not as I'd like. The past year I had to mostly give them up due to GI trac errosions and gastritis. So, right now I take them very sparingly as well I sparingly take tramadol and vicadin for pain. Mostly I simply have a very high pain tollerence and willpower.
Posted By: dmx07 Re: The fatigue ... the soul-crushing fatigue - 04/24/15 06:06 PM
Have you tried COX-2 inhibitors like Celebrex? They don't cause as much stomach irritation.
Posted By: Possi Re: The fatigue ... the soul-crushing fatigue - 04/24/15 10:10 PM
Oh yes, the fatigue is awful. I have always thought my fatigue was Lupus related but reading all these posts, who knows? I just know I am so fatigued.

I do want to suggest that you see your gp and make sure there is nothing else wrong. It is so easy to get tunnel vision and think everything is disease related. There are so many things that can cause fatigue. Once, it was my heart. Once, I was very anemic. Your vitamins and minerals can be out of whack. I have had to add B12 and Potassium just in the last week.

Just a suggestion. Hope you feel better soon.
Welcome to the forum.
Posted By: dmx07 Re: The fatigue ... the soul-crushing fatigue - 04/24/15 10:46 PM
Fatigue is profound in AS and a prominent symptom. Some even say it bothers them more than pain.

You can wake up unable to get up of bed feeling completely wiped out.
Posted By: Possi Re: The fatigue ... the soul-crushing fatigue - 04/25/15 09:38 PM
Oh yes. Some mornings I wake up as tired as when I went to bed!
Posted By: Neeta Re: The fatigue ... the soul-crushing fatigue - 04/25/15 10:11 PM
I am newly diagnosed with AS and its been a whirlwind. The fatigue is crushing. I got to bed at 7:30 pm every night for months. I have had a yoga practice for 12 years and always had some lower back pain. About 3 months ago I started seeing doctors and sure enough SI joints are inflamed. All scans lit up as a X-mas tree they said. I started Humira last week. And just in the week, the arthritis has spread to my hands and some to my feet, my shoulders and neck. This morning I woke up without being able to move my neck.

Besides the fatigue, the pain is excruciating. I haven't been able to exercise or do yoga for last 6 weeks now. Every morning I wake up and I can hardly get out of bed. I feel like I was in a fight the night before.


I have been on a gluten/wheat free diet (only grain is rice and a handful of times quinoa) and no refined sugar, and very low dairy. I don't feel any better (my skin looks great:) )

I can see from reading this forum that Humira helps with the fatigue and pain. But, how long does it take?

Neeta
Posted By: dmx07 Re: The fatigue ... the soul-crushing fatigue - 04/26/15 02:16 PM
Humira will help, some people get full relief from the first shot, for others it may take three months to notice any effect.
Jason, have you tried ginger as an anti-inflammatory? I eat a few slices (each about the size of a quarter) of fresh ginger almost every evening - until I run out and forget to buy more. :-/

Ginger is a proven natural anti-inflammatory and is also great for indigestion/sour stomach.

It helps, but it's definitely an acquired taste.
Dmx07 & RBarnes- Thanks for the advise. I've not tried either supplement or drug. I'll check out the ginger sometime. I think I'll skip any more prescribed drugs for now; I am about totally tapped out financially from the cost of my health care. Over $1800 out of pocket this year so far... It's a good think I tend to be tough as nails and have a strong constitution, I guess. I always tell myself I shouldn't complain. I think about those with this and RA before biologics, my own grandmother became crippled/ disabled back in the day 70's/80's and I don't have to go through that. So, you know positive thinking and all that.
I am on Enbrel injections for the last seven years. The enbrel has helped with the pain. But the fatigue is horrible. I am 63 yrs old in good health and fairly active. (biking, walking) I am not in a flare. For the last six months I will take a 3-4 hour nap, get up make dinner and clean up and go back to bed around 7 or 8. I feel good in the morning but as the day goes on I start feeling very tired. Do any of you have this fatigue without being in a flare? My blood panel tests are normal

HLA_B27 positive
Lupus
AS
methotrexate, enbrel 1 x wk, wellbutrin, zoloft, fosamax, norco as needed.
Posted By: Inanna Re: The fatigue ... the soul-crushing fatigue - 07/15/15 12:48 PM
The fatigue can be soul-crushing. I've been on biologics for ten years and have more energy than I've ever had. It was a revelation to me just how bad the lack of energy was and how long it had been going on - since very young childhood.

That said, I still feel fatigued a lot. Sometimes I wonder if the fatigue is the edge of what I would be feeling if I weren't on biologics.

Query - How many of these feeling constant fatigue have had a sleep study done to see if there is an underlying problem. They found I have restless legs and at one point, during a period of extreme stress, my alpha waves never turned off so not only was I not getting recuperative sleep, but my fight or flight response was working 24/7. Once I got the restless legs treated and dealt with the stress things calmed down. I still feel fatigue, but nowhere near as badly.

Warm Hugs,
Thank you Kat for your reply. I have had a sleep study done, it was okay. I will talk with my rhuemy. Maybe my enbrel has stopped working.
Posted By: Orch Re: The fatigue ... the soul-crushing fatigue - 07/15/15 02:34 PM
My son in law is from South America. He gave me some 'mate' to drink. That helped my fatigue.
© Kickas.org